Stem Cell Treatment: Is it worth it?

Going through treatment
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Hi. I have Myeloid Sarcoma which is a rare form of Acute Myeloid Leukaemia. My sarcoma is being treated the same way as Acute Myeloid Leukaemia. I had a weeks very intensive chemo treatment in hospital, followed by three weeks of recovery.

Since then I have been told I need a stem cell transplant, as my cancer cells have mutated. The stem cell consultant explained all the process, the possible side effects, and long-term effects. He also mentioned my long-term quality of life could be affected. He also told me that without the stem cell treatment my chances of a long-term remission with chemo alone would be 20%. With the stem cells this would rise to 40%.

Problem is I’ve just received the Stem Cell Specialists letter explaining all this. Seeing it in black and white and being able to re-read the letter, I’m now having doubts whether to go through it all.

i don’t have anybody dependent on me. My wife died 2 years ago (of cancer) and we had no children.

Up to the point of getting the symptoms of the sarcoma (jan 2022) I was a very fit 53 year old man – I was a competitive cyclist and since the first lock-down I discovered the joys of hiking, culminating in doing the York 3 Peaks in 10 hours and a 2 day expedition walk of 50 miles in total.

I’m now of the opinion that quality of life is better than a long life.

I’ve had a good life, so is stem cell transplant worth the ill-effects if I only have a 40% chance of long-term survival and I could end up with some bad quality of life issues? I’m wondering whether to not bother, carry on with the chemo treatment to shrink the Sarcoma as small as possible, recover and feel better and have a few good years of living life.

I’m so confused right now.

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Hi @Nethermoor

Welcome to the forum. I’m sorry you have a reason to post here, and I’m so, so sorry you’ve had such a bad time, with the death of your wife and your own diagnosis. That is a lot to go through. How are you coping? I hope you have people around you who are supportive.

Obviously, the experience of Stem cell transplant is very variable, depending upon one’s fitness before getting cancer, and age, illness, the infections one gets during the process etc etc. But as someone who had Acute Myeloid Leukaemia at 50, followed by a Stem cell transplant, I can attest to my quality of life not being diminished at all. I’m 18 months post-transplant, and feeling fitter than ever. I’m doing approx 5 hours of HIIT per week, and 2 dog walks every day, and I was never particularly fit before - and this is with slight heart damage from the chemo (that was very bad luck, but it actually isn’t much of an issue.) I would have been back at work 6 months ago, if I hadn’t had a mild C.diff infection that was tricky to shift. I feel great, I really do - and so thankful I’ve been given a second chance at life. Every day and every experience is so much sweeter. I appreciate life like never before. That is my experience - and you might well have a similar experience to me.

Hmm, I would not worry too much about that old 40% statistic, if I were you. I asked my consultant outright about this, because I was horrified at the 50% chance I was given of ‘being alive and disease free’ in 2 year’s time. And seeing it in the summarising letter was even worse. My consultant said they give EVERY Acute Myeloid Leukaemia patient that statistic (it is not personalised particularly to you) regardless of previous health and gene mutations etc, and it is an old statistic that probably doesn’t reflect the much improved transplant techniques and survival rates over the last 10 years or so. There isn’t the gathered data yet to show just how much things have improved… And after two years, your chances of surviving much longer, shoot up anyway. So this 40 (for your rarer Acute Myeloid Leukaemia) or 50% has to be put in front of you - they have to give you a rough indication with the stats they have - but honestly, I should ignore this. You do you. You are an athlete - I bet you were in fantastic shape, and ate well, and avoided crack cocaine (!) and that you have a fantastic chance of doing really well. I’ve read here or elsewhere about lots of athletic people returning to their sport in admirable time. But do be aware that the first year or two post-transplant can be rather infection-filled. I’ve had a few - but even then I felt pretty good and still enjoyed life.

It might be worth reading through threads here to get an idea of the recovery process, as it is a big procedure to undergo. And there’s also a Stem cell transplant Fb page for UK Stem cell transplant patients.

You’re still young, and you could have so much more wonder and joy ahead of you. It might be worth accessing some counselling to talk through any fears, and to help clarify your thoughts. And you could ring the helpline here too. Or just chat to us. Please do keep in touch if you’d like to discuss it anymore.

Thinking of you, and sending out warmest wishes to you in what must be a tough time.

All the best.

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Oh I am not surprised that this dilemma is confusing you @Nethermoor and unfortunately nobody can make that decision for you.
I am glad that you have the Stem Cell Specialists letter explaining all the facts.
All the percentages, pros and cons, personal circumstances, practicalities, fears, thoughts and feelings would be going round and round like a washing machine in my head if it were me.
All I can say is that if you would like to talk to someone the Blood Cancer UK support line is there for you and if typing helps de-mystifies things for you please use our wonderful forum.
Macmillan Cancer Support also has a support line.
There is no right or wrong decision and we are here to support you whatever you decide.
Please keep posting and be kind to yourself

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Thank you for you in-depth reply. It has given me plenty to think about but all positive thoughts. I’ll look into the other threads you mentioned – thanks and all the best.

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Thank you for your reply. I’ll give the support lines a ring.

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Hi @Nethermoor. I also forgot to say that my nurses warned me that what the transplant team would say would sound dire, and that I mustn’t be depressed by that, because many people make great recoveries after Stem cell transplant. I’ve spoken to a lot of people who are indeed very well.

Also, I entered into the whole cancer situation having just witnessed the death of a very close friend from lung cancer - literally 4 weeks before I was diagnosed. I felt extremely low about my chances. I think my friend’s death inevitably coloured my thinking for a while. Is it possible your wife’s death is affecting how you feel and see things a little? It took a bit of work to change my thinking. I listened to guided meditations imagining my body in perfect health and my mind in utter positivity. Not for everyone, but it kept me sane and buoyant through the treatment.

Hope this helps. :blush:

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Hello @Nethermoor,
Thank you so much for being so open with your situation and i am so sorry to hear of the really difficult place you found yourself in. I am also very sorry to hear of the loss of your wife. I do hope you are coping okay?
I am quite possibly unable to add anything new to what others have so brilliantly replied to you with, but something we do know all too well is how terrifying and stark the stem cell transplant discussions can be. It often leaves people questioning their decision and can also allow for more conversation with others who have experienced stem cell and can share their journey. i do hope you are able to find this in our forum and possible via Real stories | Anthony Nolan.
You have articulated your concerns just brilliantly and it is so important to do so with the transplant team and indeed your own team who will be able to further offer support and hopefully reassurance to you.
Also in case it is helpful i have linked here to a previous thread within our forum which has also raised simialr concnerns- Hi I’m being advised to have SCT and I’m very worried. I would be grateful to hear from people thank you - Going through treatment - Blood Cancer UK Forum

Please do know that if you would like to talk anything through with our support service team, we are always just a phone call away- Blood cancer information and support by phone and email | Blood Cancer UK

Do Take Care and keep planning those incredible hiking trips, Lauran

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Hi @Nethermoor,
I’m almost, a month to go, to being 14yrs post Stem cell transplant. The treatment is tough, with pitfalls along the way, but I think worth it!
I was 2yrs post when i was allowed to take my first ‘cattle class’ flight to Europe & told to expect a cold on my return. I never got one!
8 months later I flew to the Caribbean for a 2 week cruise & have since undertaken 17 or so more, with my husband. I have been to places I never thought I’d ever experience.
I’ve watched my 2 children mature & find life partners, I have a 4 yr old grandson. I have a full & rewarding life that I am so thankful to University Hospital Southampton for.
You are the only person whom can decide. The recovery is also a long road. I was lucky to have a loving, caring partner but I think it would have been even more tough recovering alone. You will be tired, you will have to be very conscious of infection for a while after recovery. Recovery is a series of baby steps not a marathon.
My advice if you do decide to go ahead with Stem cell transplant is to listen to all the team have to say & follow their instructions to the letter, even if it sounds crazy to you, they definitely know what they’re talking about.
Good luck.

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Hi @Nethermoor a stem cell transplant is a major procedure and the actual process can be a bit gruelling and as others have said not everyone reacts the same way but most transplants are straightforward at least in part. There are lots of people to talk to about this though if you are having doubts, not least your medical team but as others have said, the final decision is yours and only you know how you feel.

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Hi @Corfu80 what have you been up to?
Look after yourself

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Hi Nethermoor,
I Received a diagnosis of Acute Myeloid Leukaemia exactly 2 years today. As part of my treatment I had a stem cell transplant and although the chemo, conditioning treatment pre-transplant were gruelling I have ‘managed’ the transplant with minimal issues. I am currently 55 and now enjoying my life that I feel has been given back to me. As others report I value every minute and plan to live life to its fullest. None of us knows how long we’ve got…during my treatment, two of my friends died, one from cancer the other from a heart attack, I’m determined to live my best life for them. Take the advice from your medics and read others experiences (can be very reassuring) and I’m sure whatever you decide it will be the right decision for you. Hugs :hugs:

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I don’t know if it’s worth it or not since I have not had one but doctors say it’s very risky.However,if it works,stem cell seems to be the one cure for these rare blood cancers as everything else is treating the side effects but not the thing itself.I have just had a huge lymph node,well I assume that 's what it is, around my hip.Like a piece of wire under the skin and about 6cm long and 15mm wide but no B Symptoms with it.It might be reactive but I can’t see what it’s reacting to as there’s no damaged skin around there.So I’ll have to ring the hospital as I’ve given it about 2 weeks to go down itself, advice from the NHS website,but I suspect it’s something to do with the Mycosis Fungoides.

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Hi @Kevan7 yes, good thinking to ring the hospital, please let us know how you get on.
If it were me I know my mind would be going into overdrive, I find that the not knowing is worse than the knowing.
I’ll be thinking of you, look after yourself

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Yes apart from the lymph node I have thought about 2 other things it could be 1/trapped nerve,2/hernia.I have ruled out a trapped nerve as they spasm and don’t last long . Hernia I don’t know much about but from people I know who have had them they seem to be around the stomach wall.I suppose that I know it’s the lymph nodes but eliminating less serious other things it could be.It’ll be 2 weeks on Monday since I noticed it so will ring the hospital then.

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Hi @Nethermoor, I’m so sorry to hear about your diagnosis and the loss of your wife. You have certainly been through a very challenging time.

Dealing with a bereavement is incredibly tough and I also wonder if this is weighting the issue of whether to go for the stem cell transplant or not.

It sounds as though you were fit and active previously and a relatively young man. I think the medical profession always give you the worse scenarios, I guess they have to but stats and experiences are often better than the standard pretty depressing details that most of us have had to read. It does make you question whether these procedures are worth it but 40% is better than 20% Although I don’t know the possible long term effects that you might have to deal with, if it’s an autologous transplant (your own cells) many people deal with this well and make good recoveries and have extended remissions. There are lots of postings in Awaiting stem cell transplants that might give a more realistic review from real people that have had the experience, including myself. I think the two questions I would ask in your position would be - If your wife was still with you what advice would she give you and if you say no to the treatment and have a shorter remission would you regret it down the line?

I so hope that you can take some time out from the confusion and feel refreshed and able to make the right decision for you. There’s a lot of support on this forum, so whatever you decide people will be here for you.

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Thank you to everyone who replied. I was going through a mental ‘lull’ when I posted my initial question. It was my wedding anniversary, I was missing my wife a lot (still do) and feeling rough. My wife’s ovarian cancer was terminal on diagnosis. She didn’t want any treatment, she wanted some quality of life for what time she had left and died 5 months later. But her last month was horrendous for us both. I suppose her choice was playing on my mind, especially as I don’t have her by my side anymore to share life’s ups and downs.

But thanks to your great replies, and me getting through my ‘lull’ I am going to go ahead with any treatment that gives me the chance to survive this and life my life to the full. It’s what my wife Jo would’ve wanted.

Thank you

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Well done Nethermoor im glad you have made a decision you are comfortable with. Just pull your support team close around you and know that your wife is supporting you from the sidelines. Im sure she would be really proud of you. Dont forget we are here for you too. Debbie

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Oh @Nethermoor, that’s brought a lump to my throat. You’ve been through truly dreadful times. I’m not surprised you have questioned whether a transplant is for you. I think I would have probably had the same thoughts in those circumstances.

And it’s so hard to process that so much bad luck can be thrown one person’s way, isn’t it? It doesn’t seem possible or fair, and it becomes almost too much to absorb. I have noticed several people on this forum who have experienced two cancer diagnoses in quick succession, or paired with another tragedy. I’ve had my own experience - I held the hand of mine and my husband’s very close friend as he died of cancer, a month before my own diagnosis. I am still trying to come to terms with that, as I barely had time to deal with it before my own struggle began.

And you are dealing - still - with grief for your wife. It must still be very painful - 2 years is no time. So to have this on top of that - well, I just don’t know how you have coped. I’m so glad you reached out here, and that you’ve taken your time, and that you are going to give the treatment a go. I hope, like me, that you find life tastes so sweet after this ordeal. Your grief will no doubt still be there, but to realise you have survived and come through something so serious, gives a preciousness to life. And that first spring sunshine on your recuperating face… there’s nothing else like it.

Please keep in touch (if you’d like) - particularly as you go through the treatment process. We can cheerlead you from our sidelines here. Many of us understand the challenges, and the eventual rewards, so please do keep in touch if you need treatment friends.

Warmest wishes.

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Actually @Nethermoor it sounds as if you have been thinking a lot and actually unpicked how your thoughts were concluding, I really admire your insight.
Of course you are still grieving, you always will be, Jo sounds so special and her last days so horrendous and vivid.
Whatever you decide you now have your forum family to support you.
Look after yourself

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If I told you that my Mum died of lung cancer 6 months before my wife was diagnosed then you can appreciate I’ve had enough of the C word! You would have thought that ‘lady luck’ would have been on my side, but she’s deserted me these last few years.

Anyway thanks so much for your kind and positive reply – I am determined even more to beat my cancer to make sure this bloody disease doesn’t take one more member of my family!

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